Justina Pelletier, age 15, and her family won a small victory to get Justina the help she needed. This trial came after 13 months of separation from her parents–they had lost custody of the teen due to a hospital calling child protection services. Why? Justina’s parents did not agree with the treatment for Mitochondrial Disease that her doctor had laid out for her.
According to Fox News:
At Tufts, Justina underwent an extensive medical treatment program involving invasive surgery and medication, all related to her Mitochondrial diagnosis. According to Lou Pelletier, Justina’s medical treatment was under the direction of Dr. Mark S. Korson, a respected physician who specialized in metabolic disorders, and all surgical procedures were approved by medical insurance.
But at Boston Children’s Hospital Dr. Jurrian Peters assessed Justina’s symptoms and brought in a psychologist, concluding that her medical problems were brought on by a psychiatric disease called Somatoform Disorder. Boston Children’s Hospital asked the Pelletiers to sign a form agreeing to cease any further medical treatment in regards to the Mitochondrial Disease. When they objected and demanded to bring Justina back to Tufts where she had been treated for a year, they brought DCF in and stripped them of their custodial rights on grounds of alleged medical abuse.
Editor’s note: Highlighting ours.
Mitochondrial Disease is incredibly hard to diagnose. According to the United Mitochondrial Disease Foundation, mitochondria creates more than 90 percent of the energy in your body and is needed in order to sustain body functions. The disease, depending upon where the mitochondria malfunctions are occurring, can cause a number of symptoms that can really affect a person’s day-to-day living. It affects mostly children, but can be found in adults too.
Last year, I met one teen who had Mito, which her mother called “the invisible disease.” Although she seemed fine on the outside — her life wasn’t normal by any stretch. She went from being an active cheerleader to being unable to take college courses because she was unable to get out of bed. And if she were to catch an infection, or a simple cold, something like that could be life threatening — a similar predicament which landed Justina at Boston Children’s Hospital. There was also a young child whose entire gastrointestinal system rendered him unable to eat or digest food on his own, causing disorders such as gastroparesis.
Parents of these children, like Justina’s parents I’m sure, want to help their child in the best way possible. There isn’t a cure for Mito, only ongoing treatment and sometimes a drug cocktail to help alleviate the symptoms.
While I’m not doubting that medical child abuse is real, I’m questioning the steps taken and it’s consequences in this particular case. It’s crazy how easy it is for one doctor to override another hospital’s diagnosis and then charge the parents with abusing their child. As a result, a child was taken from her parents and her health declined after they stopped her medications.
The father told Fox CT that what the hospital did was kidnapping. And it certainly is. Justina was taken from her family after her parents refused recommended treatments by Boston Children’s Hospital–probably because they didn’t agree that their child was suffering from a mental illness. They are allowed to see her only once a week for one hour and with two 20 minute phone calls.
This isn’t one of those cases where parents avoid all medical treatment for their child and instead seek prayer. The Pelletiers had actively sought treatment for their child. Their proaction is being punished with accusations of child cruelty. They lose their right, as her parents, to do what’s best for Justina. Their original doctor at Tufts remains on their side.
I get it. People take child abuse claims seriously. But this is ridiculous. There is heavy evidence to suggest that it wasn’t abuse by way of the first hospital, which clearly that wasn’t factored into the situation. Thankfully, a judge recently allowed Justina to get treatment from Tufts Medical Center — the place that diagnosed her with Mito. Hopefully, she will get the help she actually needs.
However, the fight isn’t over yet. She’s still not back at home with her family. If you want to help Justina and her family, visit the Free Justina Facebook page.
For a more in-depth look at this story, read the Boston Globe two-part series.